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Second Report: Involuntary Or Coerced Sterilisation of Intersex People In Chapter 1 1.1 On 20 September 2012, the Senate referred the involuntary or coerced sterilisation of people with disabilities in Australia to the Senate Community Affairs References Committee for inquiry and report. On 7 February 2013 the Senate amended the terms of reference of the inquiry to add the following matter: 2. Current practices and policies relating to the involuntary or coerced sterilisation of intersex people, including: (a) sexual health and reproductive issues; and (b) the impacts on intersex people. 1.2 The addition of this item reflected the growing awareness by both the committee and stakeholders of a significant overlap between issues faced by people with disability and by intersex people. The committee's desire to examine the issues more closely was also fostered by the work of the government and the Senate Legal and Constitutional Affairs committee on the Exposure Draft of Human Rights and Anti-Discrimination Bill 2012, and the subsequent Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Bill 2013. 1.3 On 17 July 2013 the Community Affairs committee tabled its first report, on involuntary or coerced sterilisation of people with disabilities in Australia. This second, and final, report addresses the term of reference concerning intersex people. 1.4 The committee has benefited from the cooperation of many individuals and organisations, who have responded to questions and helped the committee to understand this extremely complex field of human rights and medicine. The committee is particularly grateful to Organisation Intersex International Australia (OII) for its assistance in locating a range of reference materials, and to a number of specialists in the field, such as Dr Hewitt, Professor Warne, and Dr Cools and her colleagues who provided reference material and answered the committee's questions. The committee recognises the efforts all these people have made to assist the inquiry. 1.5 Because of the technical nature of the inquiry and differences of view between stakeholders regarding the published research, wherever possible the committee considered the original research publications in the field, rather than relying on their interpretation in submissions. For this reason, this report relies to a greater extent than usual on peer-reviewed published research material. The committee is grateful to submitters, the Parliamentary Library, and other libraries around the country for assisting in sourcing this material. What is intersex? 1.6 'Intersex' describes biological variation in members of a species that means they cannot be comprehensively described by the labels 'male' or 'female'. Intersexuality occurs in many species, including humans, and it represents a range of genetic, chromosomal and hormonal circumstances. Intersex may be evident from genotype: a person may have variations in their genes and chromosomes other than the 2 46,XX and 46,XY that define typical female and male sex respectively. There may be variations in phenotype: the observable sex characteristics of the body may differ from those of a typical male or female. 1.7 Intersexuality is sometimes but not always evident at birth: [I]ntersex people are diagnosed visually, at birth, or via amniocentesis, by chromosome, and other blood tests… Intersex differences may also be determined during infancy, at puberty, when attempting to conceive, or through random chance.1 1.8 Intersex is not the same as transgender or transsexual. As OII explained: Trans people include people who are born unambiguously one gender but who, later in life, identify and present in the world differently. In contrast, intersex is not based on identity, even though non-standard identities might be regarded as a logical possible consequence of nonstandard anatomies.2 1.9 The circumstances that can lead to someone being intersex include unusual combinations of X or Y chromosomes, physiological variations in genitals that are not apparently male or female at birth (and/or subsequently) and variations in hormone production at different stages in development. This was well explained by the World Health Organisation's genomic resource centre: Humans are born with 46 chromosomes in 23 pairs. The X and Y chromosomes determine a person’s sex. Most women are 46XX and most men are 46XY. Research suggests, however, that in a few births per thousand some individuals will be born with a single sex chromosome (45X or 45Y) (sex monosomies) and some with three or more sex chromosomes (47XXX, 47XYY or 47XXY, etc.) (sex polysomies). In addition, some males are born 46XX due to the translocation of a tiny section of the sex determining region of the Y chromosome. Similarly some females are also born 46XY due to mutations in the Y chromosome. Clearly, there are not only females who are XX and males who are XY, but rather, there is a range of chromosome complements, hormone balances, and phenotypic variations that determine sex.3 1.10 The Disorder of Sex Development multidisciplinary team at Royal Children's Hospital, Melbourne submitted that there is a range of circumstances that meet the criteria of being intersex: • Some life threatening conditions such as salt wasting congenital adrenal hyperplasia, which requires lifelong medications and medical care; • Babies born with ambiguous genitalia; 1 Organisation Intersex International Australia, Submission 23, p. 1. 2 Organisation Intersex International Australia, Submission 23, p. 1. 3 World Health Organisation, Genomic resource centre, Gender and genetics: Genetic Components of Sex and Gender, http://www.who.int/genomics/gender/en/index1.html (accessed 22 July 2013). 3 • others which involve significant penis anomalies (hypospadias); • others involving girls who are born without a vagina and uterus; and • babies who are born with only one opening for bladder, bowels (and vagina) or where the entire lower abdominal wall and genital area is open and exposed with the inside of the bladder open and the clitoris or penis in 2 un-joined halves.4 1.11 There is a bewildering array of terms and medical conditions describing intersex, with many having synonyms. A number of these will be discussed at various stages in this report, and by inquiry participants. These clinical descriptors include: • Congenital Adrenal Hyperplasia (CAH) • 47,XXY (or Klinefelter syndrome) • 45,X (and variants, or Turner's syndrome) • Partial Androgen Insensitivity Syndrome (PAIS) (or Reifenstein's syndrome) • Complete Androgen Insensitivity Syndrome (CAIS) (or Morris' syndrome) • Gonadal Dysgenesis (including, depending on the classificatory approach, Frasier syndrome, Denys-Drash syndrome) • MRKH (also known as Vaginal Agenesis) • 5α-Reductase Deficiency • 3β-Hydroxysteroid Dehydrogenase Deficiency • 17-Ketosteroid Reductase Deficiency • 17β-Hydroxysteroid Dehydrogenase Deficiency 5 • True hermaphroditism. 1.12 Intersex can include circumstances where the person will benefit from – indeed require – medical intervention, and intersex conditions are classified by the World Health Organisation as endocrine disorders.6 Intersexuality however does not necessarily involve a medical condition: Intersex is not a medical condition or a disorder or a disability or a pathology or a condition of any sort. Intersex is differences in the same way 4 Disorder of Sex Development multidisciplinary team at Royal Children's Hospital, Melbourne, Submission 92, pp. 2–3. 5 Organisation Intersex International Australia, Submission 23, p. 3; Androgen Insensitivity Syndrome Support Group Australia, Submission 54, p. 2; Martine Cools, Stenvert L. S. Drop, Katja P. Wolffenbuttel, J. Wolter Oosterhuis and Leendert H. J. Looijenga, 'Germ cell tumors in the intersex gonad: old paths, new directions, moving frontiers', Endocrine Reviews, Vol. 27, No. 5, 2006, p. 470. 6 World Health Organisation, International Statistical Classification of Diseases and Related Health Problems (ICD)-10 Version: 2010, http://apps.who.int/classifications/icd10/browse/2010/en (accessed 22 July 2013). 4 height, weight, hair colour and so on are differences. Only a very few ways of being intersex have links to differences that might cause illness. Congenital adrenal hyperplasia (CAH) is the most common. Strangely very few CAH individuals are intersex despite it being classified by medicine as a way of being intersex. We know of no XY CAH individuals who are intersex. We know most XX CAH individuals are females capable of having a child with very few anatomical differences of sex. Some intersex [people] have very striking differences in anatomical presentation but they are usually very healthy and able people.7 1.13 Some intersex people are naturally fertile. Others may be infertile, however their gonads—whether ovaries or testes—are capable of producing hormones. There are also some intersex people who, while not capable of unassisted reproduction, may be able to have children with medical support, either with existing reproductive assisting technologies, or as new scientific advances occur. How common is intersex? 1.14 Figures for the incidence of intersex are difficult to come by. The UK's National Health Service suggests a range of 0.1 to 2 per cent of the population.8 The Australasian Paediatric Endocrine Group (APEG) indicated that the incidence ranges from: 1 in 125 boys for a mild variant, to 1 in 4500 babies where genitalia appear significantly ambiguous at birth such that the sex of the infant is unable to be immediately determined.9 1.15 Some mixed sex chromosome conditions
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